The most common form of scoliosis is adolescent idiopathic scoliosis (AIS) – scoliosis with no known cause, diagnosed in a teenager. While some sources claim that treatment is unnecessary for most cases of AIS, this is a narrow point of view that does not take into account the preferences of the person living with the condition. If their scoliosis is not causing pain, nor affecting their appearance, physical function, or emotional well-being, and they are not concerned about the long-term effects of living with it, then it is within their rights as an individual to decline treatment. However, many cases of scoliosis do have an effect upon a person’s health and quality of life – it is simply often well-hidden, and requires careful time and attention to recognize it.
Sometimes, teenagers with scoliosis care about how their condition affects their athletic ability. Although impairments with lung function are seldom detected at rest until the scoliosis progresses to severe levels, new research has shown that even a small scoliosis can reduce the body’s ability to exercise and function at its full potential. Only when challenged by heavy exertion do the restrictions in breathing become more apparent in mild scoliosis.
Scoliosis can affect a young person’s career choices. The military and armed services have a policy not to allow people with severe scoliosis to enlist. In 1897, General Douglas MacArthur was initially refused entry at West Point due to his scoliosis; he overcame his scoliosis by performing spinal exercises under the care of Dr. Franz Pfister MD in Milwaukee, Wisconsin, for one full year. In 1899, he was re-examined and allowed entrance due to the improvement in his scoliosis.
Some of the things that young people with scoliosis are most concerned about have little to do with pain or function, and more to do with practical matters. A young woman with scoliosis might be most aware of how her scoliosis affects her fashion, hairstyle, and clothes – this is by no means and in no way a small matter! Don’t underestimate the emotional impact of wearing dresses or hairstyles that appear to hang unevenly. Support her in finding a tailor, stylist, or hairdresser that understands how to style her hair and alter her clothes the way she likes, that complement her unique body type and posture; this can have a powerful, positive effect upon self-esteem.
Although it may be difficult, it’s important to understand how an individual feels about their scoliosis. Some young people might think it’s no big deal, and feel very comfortable discussing it and letting others know about it; others might prefer to keep it private – neither way is the “wrong” way to deal with scoliosis. It is all about what makes them feel safe and secure. Be respectful of how open (or private) people with scoliosis choose to be about their condition.
Avoid using words like “deformity,” “rib hump,” and “disease.” Instead, use “condition,” “arch,” and other words with less negative connotations. Focus on the positive life lessons that can be learned from overcoming scoliosis. No one understands more about true inner beauty than a teenager with scoliosis!
Do encourage young people to find support groups online, if they would like; it is always nice to know you are not alone, and to find companionship with others who are going through similar circumstances. There are many wonderful scoliosis support groups available, including Curvy Girls, Scoliosis Support, and scoliosis forums on Daily Strength and the National Scoliosis Foundation website. There are also support groups available for parents, as well.
If you are a parent of a child with scoliosis, it is important not to feel guilty that you somehow “gave” your child scoliosis, or should have noticed it sooner. While scoliosis does tend to run in families, it is not genetic, and the even brightest minds in the world are not sure if it can be prevented. Furthermore, scoliosis tends to develop at a time when young people are beginning to become very conscious of their bodies and privacy, so the subtle changes in posture and the symmetry of the back and ribs are easy to miss. Many parents say they feel like their son or daughter’s scoliosis suddenly appeared overnight. Don’t feel bad or wish that you had caught it earlier; focus instead on being proactive and positive about what you can do moving forward.
The best way to do this is by educating yourself about scoliosis, and sharing the information with your son or daughter. Ralph Waldo Emerson said, “The antidote to fear is knowledge.” The more you know about scoliosis, the better equipped you are to make decisions about what to do. You should strive to be an advocate for your teen, and make sure they understand that you will always be there for them, to go through this together. Adolescence can be a difficult and isolating time for any teen; a diagnosis of scoliosis can add to the challenge. As a parent, do everything you can to maintain a positive attitude, especially when your teen is feeling discouraged. Studies have shown that kids can sense their parents’ emotional states, and will often reflect them. Be optimistic and confident, but at the same time, be careful not to dismiss the scoliosis as unimportant; your child may sense that, and feel un-obligated to do anything about their spine or stay compliant with treatment, in turn.